Health Information Behavior in Parents of Children With Congenital Heart Disease in China: Qualitative Study Through the Lens of Chinese Culture

Parents of children with CHD seek health information from both online and offline sources and also combine health information from professionals and peers. Medical institutions should provide authoritative information resources, while regulatory authorities should conduct professional reviews before disseminating health information online to foster a reliable information environment. Additional efforts should focus on utilizing rehabilitation narratives from peer networks, delivering personalized information support tailored to parents' information-seeking styles and children's disease stages, and offering training and services to stimulate and cultivate a conscious decision-making process regarding disease disclosure and sharing.